bad news from dermo
Question:
>So if you have any pointers to treatment centres that are OK in the States, I >would be very grateful.
Personally, I don’t have any personal experience with "treatment centers" other than my own dermatologist. I’ve heard of folks having good experiences going to teaching hospitals with outpatient dermatology departments. Contacting the NPF, www.psoriasis.org , might be a help. Perhaps someone else here has good things to say about an actual psoriasis treatment center somewhere? – Dave W. http://members.aol.com/psorsite/
Response:
>…He is >recommending an experimental immuno-suppressent (and we all know how >much fun they are…not…) called mono [something] acid which has to be >approved by the hospital board.
Big guess here: monoethyl fumarate? AKA an ester of furamic acid? http://members.aol.com/psorsite/fumaric.html >Surely there is something else to do. >I am appealing to your collective wisdom and admitting my desperation. >Is there clinics in the States or Europe or somewhere where treatment is >available, where a spotty person is not a freak.
My own list is fairly small, but might be of help: http://members.aol.com/psorsite/dermatologists.html Most of these are in the U.S., sorry. – Dave W. http://members.aol.com/psorsite/
Response:
At this point in time Dave, I am willing to do just about anything. I am going to get a bit activist like and try and get some changes to our system here. It is just sooo ridiculous that there is no in patient treatment option that I have finally found something to be angrier about than the state of my skin! So if you have any pointers to treatment centres that are OK in the States, I would be very grateful. El – Hide quoted text — Show quoted text ->…He is >recommending an experimental immuno-suppressent (and we all know how >much fun they are…not…) called mono [something] acid which has to be >approved by the hospital board. > Big guess here: monoethyl fumarate? AKA an ester of furamic acid? > http://members.aol.com/psorsite/fumaric.html >Surely there is something else to do. >I am appealing to your collective wisdom and admitting my desperation. >Is there clinics in the States or Europe or somewhere where treatment is >available, where a spotty person is not a freak. > My own list is fairly small, but might be of help: > http://members.aol.com/psorsite/dermatologists.html > Most of these are in the U.S., sorry. > – Dave W. > http://members.aol.com/psorsite/
Response:
My derm is called Tjiam (yep a Chinese), you could talk to your own derm for names. ’cause he would know how to contact them. Misty. – Hide quoted text — Show quoted text -> Can you give us some names, please? >In Holland we have exellent healthcare. I have a fantastic derm who doesn’t >dismis any kind of symptoms I have. If you want good treatment try to get in >contact with Dutch derms via your own. >It might do the trick, what have you got to lose? >Good luck, >Misty.
Response:
Can you give us some names, please? – Hide quoted text — Show quoted text ->In Holland we have exellent healthcare. I have a fantastic derm who doesn’t >dismis any kind of symptoms I have. If you want good treatment try to get in >contact with Dutch derms via your own. >It might do the trick, what have you got to lose? >Good luck, >Misty.
Response:
Hi all, I don’t like to have a mega whinge to the newsgroup – but after the last few days, things feel kinda tough. I am pretty good at dealing with having 95% coverage and having a life. I am used to it. But I went to see the derm yesterday and it has flattened me a bit. I have been on Neo Tigason (soriatane) for 3 years. 50mg per day, same dose as Mark. It has only kept me at 50% coverage, which is fine. I have done all other meds, before you ask, and my derm is seriously tops. I had two PUVA treatments, and went from 80% to current over a weekend. I have been doing wet dressings with thick grease moisteriser and mild steriod cream (celestone – not sure what it is called o/s) for 4 weeks, with only mild improvement. My legs are swollen and feet aching. My derm told me that it is a disgrace that I can’t find treatment here in Australia, anywhere. No hospital, public or private, nothing. He is recommending an experimental immuno-suppressent (and we all know how much fun they are…not…) called mono [something] acid which has to be approved by the hospital board. Surely there is something else to do. I am appealing to your collective wisdom and admitting my desperation. Is there clinics in the States or Europe or somewhere where treatment is available, where a spotty person is not a freak. Here, my only option is a bed in the acute surgical ward where the derms are no longer sending patients cos all the nurses and other patients freak out. I am soo lucky with where I work and my friends and partner that they understand and are OK with this. But it is bizarre, that in a country of more than 20 million people, there is not a single dermatology ward or in patient treatment facility available any more. Australia has weird priorities… Any info would be greatly appreciated. Thanks El, Sydney.
Response:
In Holland we have exellent healthcare. I have a fantastic derm who doesn’t dismis any kind of symptoms I have. If you want good treatment try to get in contact with Dutch derms via your own. It might do the trick, what have you got to lose? Good luck, Misty. – Hide quoted text — Show quoted text -> Hi all, > I don’t like to have a mega whinge to the newsgroup – but after the last > few days, things feel kinda tough. > I am pretty good at dealing with having 95% coverage and having a life. > I am used to it. But I went to see the derm yesterday and it has > flattened me a bit. > I have been on Neo Tigason (soriatane) for 3 years. 50mg per day, same > dose as Mark. It has only kept me at 50% coverage, which is fine. I have > done all other meds, before you ask, and my derm is seriously tops. > I had two PUVA treatments, and went from 80% to current over a weekend. > I have been doing wet dressings with thick grease moisteriser and mild > steriod cream (celestone – not sure what it is called o/s) for 4 weeks, > with only mild improvement. My legs are swollen and feet aching. > My derm told me that it is a disgrace that I can’t find treatment here > in Australia, anywhere. No hospital, public or private, nothing. He is > recommending an experimental immuno-suppressent (and we all know how > much fun they are…not…) called mono [something] acid which has to be > approved by the hospital board. > Surely there is something else to do. > I am appealing to your collective wisdom and admitting my desperation. > Is there clinics in the States or Europe or somewhere where treatment is > available, where a spotty person is not a freak. > Here, my only option is a bed in the acute surgical ward where the derms > are no longer sending patients cos all the nurses and other patients > freak out. > I am soo lucky with where I work and my friends and partner that they > understand and are OK with this. But it is bizarre, that in a country of > more than 20 million people, there is not a single dermatology ward or > in patient treatment facility available any more. Australia has weird > priorities… > Any info would be greatly appreciated. > Thanks > El, Sydney.
Response:
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